Pediatric Palliative And Hospice Care At Home: Development Of A Measure Of Family-Reported Experiences

While children with serious life-threatening illnesses (SLTIs) are increasingly being cared for primarily at home by their families, an estimated 5,000 U.S. children are living within the last six months of their lives on any given day, many with significant, medically-complex care needs. Pediatric palliative and hospice care at home (PPHC@Home) plays a critical role in supporting children with SLTIs and their families. Yet, experts are concerned that these children and families are not receiving consistently high-quality PPHC@Home. Providing consistent, high-quality care that meets children’s and families’ most important needs and priorities requires the systematic measurement of care, although no previous family-reported experience instruments exist to specifically evaluate PPHC@Home in the U.S. Using a multi-method, multi-stakeholder approach, the purpose of this dissertation project was to develop a measure of families’ experiences with PPHC@Home. In Aim 1, I explored parents’ priorities for PPHC@Home using a discrete choice experiment with parents whose children have received PPHC@Home. In Aims 2 and 3, I followed a phased instrument development process, including item selection, item prioritization and reduction, and cognitive interviewing. Starting with a pool of 100 items derived from existing outcomes instruments in PPC, standards of practice, and quality guidelines, I developed the EXPERIENCE@Home (Experiences of Palliative and Hospice Care for Children and Caregivers at Home) Measure, which contains 22 of the highest-valued items, as rated by PPC providers, researchers, parent advocates, bereaved parents, and parents currently caring for their child. In Aim 4, I propose next steps to evaluate the validity, reliability, acceptability, feasibility, and clinical utility of the EXPERIENCE@Home Measure from the perspective of parents and PPHC providers in a post-doctoral fellowship application. Through this dissertation study, I have developed the first known instrument to measure families’ experiences with PPHC@Home, and proposed next steps for the evaluation of this newly developed instrument. Only by measuring patient and family care experiences can we begin to understand how to improve the care we provide to children with SLTIs and their families living at home